Sunday, April 6, 2008

Becoming a caregiver

In December 2007 Charlie, my husband, was diagnosed with stage IV mantle cell lymphoma. The only clue that anything was wrong with him was painless lumps in his arms, neck, near an ear, and armpits. Prior to being diagnosed two different doctors told Charlie that the lumps were just fatty masses. The lumps near his ear caused his jaw to dislocate. He was diagnosed with TMJ at that point. Finally, in early December a different doctor ordered a CT scan that showed extensive probable lymphoma. The next business day he saw an oncologist that just upon examining him knew that he had lymphoma. Further diagnostic tests including a bone marrow biopsy affirmed the diagnosis of mantle cell lymphoma.
On December 17, 2007 Charlie began chemo treatments. Each treatment requires days in the hospital with about a two week break between. Mantle cell lymphoma is a very aggressive, stubborn lymphoma that requires aggressive, strong chemo treatments followed by a stem cell transplant after 6-8 chemo treatments.
On March 24, 2008 Charlie had his own stem cells harvested and frozen for later en-grafting. The stem cell transplant should occur in April. At this time he will be given very strong chemo that will wipe out his bone marrow. Charlie’s immune system will be very low at this point. This is when he especially needs prayer. The hospital stay should be from 3-5 weeks long if there are no complications.
Stem cell harvesting was not at all what we expected. After reading all the literature, we got the idea that it might cause a bit of flu-like symptoms. The growth factor injections caused Charlie’s white blood count to go as high as 87.8 which was considered critical. Previous to giving himself these injections he took steroids which caused a water weight gain of about 10 pounds. The growth factor injections added another 10 pounds of water weight. This made Charlie miserable.
Another side effect was an irregular heartbeat with discomfort in the chest. A troponin blood-test was abnormal and so was an EKG. A day or so after the growth factor injections were stopped the EKG was normal and so was Charlie’s heartbeats. His oncologist believes that all of this was caused because of the growth factor injections, but the cardiologist at the hospital wants to give him an ECHO test to be certain that there is no heart disease.
Charlie’s oncologist wanted to harvest about 5 million stem cells, but settled for 2.5 million after just 2 days of harvesting. Charlie produced about 1.56 million on the first day of harvesting and only about 1 million on the second day. The oncologist said that due to the intensive chemo that he has received, he would not have been able to produce many stem cells on the third day. She says that 2.5 million stem cells will be more than enough for en-grafting.
Harvesting took two days. On the third day the catheter was taken out and blood tests were taken to make sure that blood counts were safe. The blood counts were okay with the exception of the platelet count being low and the white blood count being high. The oncologist also wanted to make sure that another EKG was normal before he was allowed to go home.
Two days later, Charlie’s platelet count was only 47, only a bit higher than two days ago. His oncologist wants the count to be to at least 100 before she begins his 6th round of chemo. We expect the platelet count to be up to 100 by early week which means that the final chemo treatment before the stem cell transplant will be this coming week.
So far, Charlie has not experienced any long term pain or tiredness from the chemo treatments. But the stem cell harvesting really surprised us with extreme tiredness and weakness. This was the most challenging step of the journey for both Charlie and I.

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